Helping children to defy disability
June 21, 2013: Hridoy (9) and Bristi (10) are trying hard to keep up their pace and synchronise with the high beat of the music as they are dancing with other children in the drop-in- centre, situated in the Koratitola-suburb of Dhaka, capital city of Bangladesh.
Due to limitations both of them were struggling to manage their movement in of the midst of other participating children. Moni, the teacher of the drop-in center noticed that and intervened to make space for both of them. The smile, sparkling eyes and body movement of both of the children clearly manifested how much they were enjoying the class defying their disabilities.
“ I used to stay home alone, had no friend and even my neighbours friendsused to push me back as I could not run while they used to play,” says Bristi, while Hridoy jumped into the conversation and says in a broken voce, “I love to come here as I can dance and paly with my friends”.
Bristi and Hridoy are two children living with disabilities. Bristi is suffering from neurological disorder from birth while Hridoy is suffering both from intellectual and physical disabilities.
Tales of struggle against disability
Life was not easy for Hridoy. he was born with a disorder of the male organ. It took time for his parents to notice that he was also suffering from delayed development symptoms. “After six months, we noticed that he is different compared to other children of his age. He does not crawl or make any sound and he used to cry all the time.
“We took him to the doctor and physician advised surgery to fix his male organ. It was an expensive surgery,” says Md. Masum (43), Hridoy’s father.
“I have requested my brothers and friends for help, but none of them came forward. Instead, they advised me to kill my son. I have sold all my belongings and mobilised money for Ridhoy’s surgery,” continues his father.
But it was not the end of the story. Rather, it was the start of a struggle for Masum. Poverty and cost of treatment brought him to the streets. He started rickshaw pulling as a means of living.
Hridoy’s mother somehow managed a job of a house-maid in Lebabnon and left Hridoy with his father. Initially, she sent some money, but after few months she stopped sending money and withdrew herself from her family.
The story of Bristi is not much different to Hriody’s.
Bristi’s mother Renu Begum (45) was abandoned along with two other children by her husband after the birth of Bristi. She had to work hard to feed her three children. Life was so difficult for her that she could not even notice that Bristi was unable stand by herself and walk till her third birthday.
Delayed development and disfigured hands and legs of Bristi often made her upset. She thought of this as a punishment from God, for which she had to suffer. According to the advise of some well wishers she took her to an exorcist, who gave a special oil message to fix her hands and legs, but did not consider taking her to a doctor. She took it for granted that nothing will change and her daughter has to live an ignominious life.
A positive turn
Things took a positive turn for Hridoy and Bristi as their families started to receive cash support from the government under the Child Sensitive Social Protection project supported by UNICEF. Now Hridoy’s father owns two cycle rickshaws and earns Taka 4000 (USD 50) per month and spends more time with his son. Hridoy has enrolled in pre-primary class in the Koratitola Pre-primary School and he regularly participates in the activities of the drop-in-centre. Due to his ill health, he often misses school but he likes his school very much.
Meanwhile, Bristi has enrolled in the same school in Class IV. “She is an intelligent girl and doing well in her studies,” says Bristi’s class teacher Monwara Begum.
With the first installment of Taka 9,000 (USD 113) Renu Begum took her to the doctor for treatment. ”I have spent about half of the money for Briti’s treatment. The doctor has said that her treatment is expensive. I do not know whether I’ll be able to continue her treatment,” says Renu Begum with frustration.
Challenges to overcome
“Children with disabilities are considered as a burden for the family. Hridoy and Bristi’s families are not different. Treatment for these children is expensive and many of the families could not afford to continue with the healthcare. Therefore, people lose hope after one or two visits, says Jakia Sultana, Social Worker recruited by the government. She is responsible for continuous follow up and development monitoring of these special-needs children.
“There is no paramedic or specialized doctor in this neighbourhood to provide special treatment that these children need,” continues Jakia. But she not ready to give up hope. She constantly persuades the parents of Hridoy and Bristi to continue their treatment and make sure that both of them go to school and participate in different activities run by the drop -in -centre.
“I can see the change in Hridoy’s behaviour, he has changed, now he does not feel shy to communicate with others.He likes the drop-in-centre very much and participates in different activities,” says Masum.
“I do not have many friends in my class. Apart from Shrimti, my other classmates do not allow me to play with them as I am unable to run. Shrimti is one of my closest friends. She always helps me in my studies, helps me organise my bag and plays those games with me that does not require running.
“I want to be a judge in future,” says a confident Bristi.
There are many challenges including social integration, proper treatment and lack of basic facilities that children with disabilities are faced with in Bangladesh. In midst of all odds, the Child Sensitive Social Protection project provides support to children like Hridoy and Bristi and helps to bring new hope for them and their families. Under this project, among 2000 children based in Dhaka, 19 children with disability received support.